Snowy Chicago and Steve Wrights Sunday Love Songs

Hi,
Sharon has got over her hangover side effects from her exploits yesterday, No rapid response calls warranted. We are listening to Steve Wright Sunday Love Song's on BBC radio 2 over the Internet. Sharon insists I`m held captive in the isolation room being tortured by Spandau Ballets little love ditty's. The nurses seem to enjoy it having a little bop along. Seems I have been promoted to patient Care tech we only have a RN today we usually have a PCT as well, so I made the bed, cleaned the room, taped up her dressing to her central line so Sharon could shower and done one set of vitals. I wonder if they will give me a password for the computer so I can chart them, they use the same cerner charting that we use at Good Sam. Must ask about that?

The snow has arrived and is obscuring the view of lake Michigan might have to steal Sharon's heated gloves to avoid loosing an extremity on the way back to the hotel. Quite novel really not much Snow in Arizona just a blue sky. Boredom is a good thing so says Dr Burt but I wonder if he knows about Steve Wrights Sunday Love Songs, awaiting the birth of more white cells now we are doing the neupagean shots again. Can`t help thinking of that Kevin Costner film field of dreams build it and they will come, hope they hurry up!!

Some one asked me to explain the blood counts we are looking at ,this should fill a little time.

He draws labs daily unless we have a fever or other abnormality.
The labs that are drawn every day are a renal panel CMP which monitors electrolytes like potassium and magnesium these are replaced as needed. The other lab is a CBC or complete blood panel which monitors the red, white and platelets cells. A hemoglobin part of the red cells are checked for anemia a number above 9 is good we dropped once down to 7.8 and she had two units of blood which are specially treated. Sharon’s platelets are low a normal count is above 100 this is normal post transplant these deal with clotting Sharon is careful when brushing her teeth these have yet to need replacing. The white cells which fight infection are counted as part of the CBC a normal white cell count is 4.5 -10 , 4500-10,000 white blood cells/mcL (cells per microliter) Sharon's count today is 0.1, Neutropenia is when the neutrophil or the white cells that eat infection are below 2000. Sharon’s are too low to count so you have to be a germ a phoebe and wash your hands all the time. so there you are!

The Northwestern has a reverse air system for the whole floor as well as individual rooms usually most BMT units have only individual room and you are isolated more we get to escape for walks three times a day. When you enter the department you come through it seems an air lock with two sets of doors neither will open without the other being closed first. It’s like a scene from 2001 a space odyssey without the space suit and mad computer, you get gloves and mask instead. The doors malfunctioned yesterday and I spent a pleasant 10 minutes with the cleaner discussing the merits of a clean environment. The doors eventually reset themselves maybe there is a faulty computer and was released unharmed in to the wide open world , thankfully not outer space.

Sharon’s doing well today no fevers and her appetite is coming back and she is feeling a little stronger. We keep marveling at the visible changes to her skin and the simple things she can now do that were difficult before. Enjoy the silence by Depeche mode things are looking up no more Whitney please Steve.
All the best Craig and Sharon

4 Days and Counting

Hi guys,
Thanks for your kind thoughts another day towards a brighter future. I am already seeing some changes 4 days post transplant. Most noticeably the skin on my hands has started to soften , I can see wrinkles where it was taut before and my fingers are now able to extend further. I think a similar thing is happening to my face as I have a different sensation to my cheeks. The Occupational Terrorist/ therapist is working hard on my range of motion and the looser skin is wonderful to see. My leg swelling has vanished and seeing normal ankles for the first time in a long while. My breathing feels ok. My white cell count is 0.4 with no fevers I start neupagen shots again tomorrow to get the new immune system working quicker.

Last Night was a bit eventful . It was late and Craig had left for the night when I experienced a strange sensation my heart was racing with chest tightness and I felt really weird my ears and jaw were doing strange things. I called the nurse and Craig at home and told them in a panic something was happening. Craig left his cooking and rushed back to the hospital. Craig started doing the vitals on the auto matic bp machine and assessing what was going on and the nurse paged the doctor. I thought I was doomed and the nurse brought me some ativan after speaking with the Doctor. Craig thought it was some kind of drug reaction and worked out it was the side effects from the anti emetic marinol after he googled it. It is used post chemotherapy and is made up from a derivative of marijuana. Apparently this is what its like to be stoned they stopped it this morning and I still feel a little off today.
Thanks for all your well wishes Sharon and Craig

Long Days of Isolation

Hope everyone had a good thanksgiving thanks to Sue and Gille for helping Mom and the Boys participate in the holiday festivities. We felt apart of it as we could see and talk to them on the web cams on our lap top from the hospital isolation room.

Well I am still Neutropenic which means I am susceptible to infection but each day is getting easier my glands have gone down and the nausea is easing with the new anti emetic and have started eating more. Generalised weakness and lethargy is an issue but I am still allowed to walk with a mask and gloves three times a day in circuits around the BMT unit. Another patient coughed when we were walking and we both held our breath and walked in the opposite direction as fast as we could manage. We both have a germ paranoia cleaning the room down regularly with sani wipes and constantly washing our hands. The days are long but try and keep busy and prevent the boredom from becoming too much.
Cheers Sharon and Craig

Blast Off

Well I got my stem cells back all cleansed and revitalised and can now focus on getting my strength back and recovering. The risk of infection is most heightened over the next few days. Dr Testorie was there and a collection of nurses and made it a special occasion for me as they treat it like a birthday. They gave me a bag with goodies and a card signed by the nurses all that was missing was a cake don`t know if its on the special diet plan. My blood counts are what is expected at the moment but my glands in my neck are up and nausea is an issue. They are switching the anti biotics round and the anti emetics. Craig is keeping a close eye on proceedings and the phone calls and messages help.
All the best Sharon and Craig

Awaiting lift off

Well tomorrow is day zero the day I get back my scleroderma free stem cells and let them loose to build my new immune system and a brighter future. My haemoglobin was low from all the chemotherapy and I received some blood to top me up. The chemo finished yesterday and I have the last immunoglobulin infusion going otherwise known as the rabbit. It was great to get rid of the catheter and irrigation today and this has helped with walking don`t feel like hopping around like a rabbit just yet. The BMT unit at the northwestern is one of the few units in America to have a reverse air system not just in your room but the whole Bone Marrow Transplant floor. This allows you to be free to walk with a mask which helps keep the old bellows going and the madness of solitary confinement at bay. Craig and the phone calls also help break up the monotony of the long days.

The 15th floor of the Northwestern yields me a striking view of lake Michigan, John Hancock Tower and Oprah's penthouse in the water tower seeing the mist this morning covering the sky scrapers was very different to the vistas of Arizona. At night Craig says it looks like a scene from the Blade Runner movie.

Well another day completed awaiting tomorrow and my new start to better health. My early Christmas present from Dr Burt arrives in the form of my stem cells tomorrow. I would give him a big hug but cannot due to isolation precautions. Even Craig won`t give me a peck on the cheek in case of bugs that's being a nurse for you..

Thanks for all the well wishes concerns and prayers.
Love Sharon and Craig

Return to the Windy City

We arrived back on Wednesday after our fleeting visit back to Phoenix. We had a great time catching up with the boys and getting things ready for Christmas as we don`t know what issues may lay ahead. Mom has been doing a great job and our friends have been fantastic. Especially Sue and Gille, Mark and Emily. Thank you all for helping out. The boys are more used to Moms routine than mine. She has it well organised.

After our short but sweet visit we boarded our carriage back to Chicago and returned to our new second home at the Northwestern. Winter has come to Chicago while we have been away and the icy chill is more noticeable. We returned this time with more apprehension and trepidation for what may lay in store for us over these perilous few weeks. I now have a new line in my rt jugular a tunneled catheter and get anti coagulation to stop the clotting problem that hindered my previous access.

The bone marrow transplant unit for the last three days is now home for me. Craig is staying at the Seneca hotel nearby at night. The unit is excellent with large individual rooms with all mod cons. The nurses and doctors are exceptional taking care of all my needs. You can instantly call your nurse on an individual cell phone a RN as well as an auxiliary. Chemotherapy is going to plan and I am tolerating it well so far. Craig cleans the room from top too bottom with each visit with the hospital sani wipes that kill everything from the plague to the common cold and is becoming a germ a Phoebe. Hope he takes these tasks back to phoenix with him.

I have a further two days of chemotherapy along with an immune globulin immunosuppresent agent called a rabbit. It helps the body accept the transplanted stem cells not a product of watership down. Today is day minus 3 and day 0 will be the day, I get my scleroderma free stem cells back. Which will make my new immune system by in grafting to my bone marrow.

Dr Testorie one of my immunologists who is originally from Italy an Ac Milan fan was telling us about the successfully treated patients he has seen receive the stem cell transplant. There was a young girl who after 18 months of scleroderma ended up bed bound with extensive contracturs. This girl is now walking and able to once again look after her self. He told us that the skin is the first improvement to be seen which is great news for me and the lungs quickly follow. People on oxygen now are off it which is remarkable. The success rate is amazing which gives us great hope for the future.

We thank you all for your continued support.
Craig and Sharon

Harvesting.

Hooray!!!
We get to fly back tomorrow and we can't wait. Why so happy? Well the last 3 weeks have seemed like an endless journey of tests and investigations with a few bumps thrown in to make it not quite the smooth journey we had hoped for, but we are halfway there to better health!!

Following the mobilisation and neupogen shots I had to go to my favorite department Interventional Radiology to have a line placed so my stem cells could be collected or harvested. No combine involved!! The Dr's remember me because of my interesting challenging vascular system and I remember them for the endless poking and prodding. This procedure is now placed towards my top ten of least favorite things to participate in willingly. I knew it was going to be a difficult day when the fluoro machine went down just as I was lying with trepidation on the table waiting for the fun and games to begin. I had to return to the holding area to extend the torture further and wait another hour or so, it reminded me of times in Endo when we have been ready and just before we start the computer crashes, how frustrating!! Anyway 2hrs later after being choked, stuck and prodded the line which feels like a hose pipe is safely sutured into my neck, I know its a slight exaggeration but that's what it felt like and off we trot relieved but forlorn to the blood center .

We have thought so hard to get to this special day but I really wanted to have enough stem cells harvested in one go so the hose could come out without clotting like the picc line had and save a return visit for the next day and a second collection. With my history of clotting we really didn't want the line left in longer than necessary and the docs were in agreement with this. We arrived at he blood center the nurse eventually took some blood moaned about the time of day and sent us off to the cafeteria to await the results.

On returning she seemed doubtful about being able to do the procedure in a timely manner argued with biochemistry about a lost specimen for another half an hour then realised the results were in the computer she just couldn`t see them and the results would probably be inadequate so wouldn`t be priming her machine until she discussed it with the Docs. Eventually she got my consent spoke with high command got the go ahead much to her dismay she primed her machine. We tried to explain the clotting issue with her and she dismissed us as paranoid nurses but at least she put some heparin in my line after we insisted and started to wash her hands which she hadn`t done before. So I spent the afternoon getting hooked up with the apherisis machine and over 4hours my stem cells were collected. Under the watchful eye of Craig and of course the blood center nurse.

It's hard as nurses when your the patient to switch off that role as you want things to be done to your standard not slap dash, the nurse did not instill confidence in us which put us on our guard. You get good and bad in all jobs but when your life's on the line you expect a standard of professionalism with the knowledge skills and experience to go with it. Everyone so far up to this point at the northwestern had been exemplary. Craig put his Nursing Sisters hat on told her a few times what was what especially when she left the blood clotting in the access port for ten minutes on rinseback. Injecting it without aspirating wasn`t going to happen. Lines draped on the floor was another beauty and whispering about us in hearing range to other nursing staff made for a stressful afternoon. The other staff seemed to dislike her as much as we did.

Harvesting went well as I survived and the stress was worth it as fortunately they got 5 million stem cells and apparently they only needed 2million, so we returned to the blood center to have the hose pipe removed . Nurse cratchet had bailed on us and talked the Drs into pulling it much to all are relief. The line was as unpleasant going in as coming out there was a lot of resistance, I had visions of the doc putting his feet on my shoulders to pull it out but he didn't need to.

We are so glad that we are now past the worst part so we have been told. We return to the hospital November 20th when I will be admitted for about 2 weeks for the stem cell transplant. We fly out tomorrow and are going to relish the time with the boys and mom and enjoy the break from hospital trips.

Thank you to everyone for all your help with mom and the boys and for all your well wishes. Thanks for taking the time to read the blog of Sharon and Craig's adventures and the quest for better health.
Love Sharon and Craig